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Sunday, October 19, 2008 - 7:56pm

The Milwaukee Golf Outing went well.  We had gorgeous weather and the course was outstanding.   The level of golf that was taking place throughout the outing was nothing to write home about (and certainly did not match the quality of the course) but we definitely had a good time and found our home for next year. 

The outing NETTED about $5,500 for the PLGA Foundation.  The attendance was down from last year, but we have some ideas and volunteers to help us double or triple our results next year.  Special thanks to The Marek Group and Packaging Solutions for their major sponsorship and support, as well as the several other people and companies that supported the event in one way or another.  And huge thanks again this year to Uncle John for coordinating the event and to all those who helped him in the process.  Out of love for his niece and his family, John found a way to pull this together again this year despite very hectic lives of their own. 

Next week starts home chemo.  Hopefully the last time we have to do anything like it for many many months.  

Halloween is approaching fast. Faith will be going as Bat Girl this year (believe it or not, she picked it from about 7 other princess or hanna montana related choices).  Hailey does not want to dress up.  She wants the candy, but she of course does not want to put on any clothes that are unfamiliar to her.  She is telling everyone she's going as snow white, but that's because she has a snow white hair band she's going to wear (and wears often) and in her mind that qualifies as a costume and makes her eligible for candy.  Maybe next year she will dress up.  Faith will have to carry the load for the Meltz ladies this Halloween as far as costumes go, but they'll both be out there filling up their goody bags.        

Thursday, December 4, 2008 - 4:33pm

It's been a while since we last updated. 

First, we wanted to make everyone aware we now have NEW PRODUCTS AND DESIGNS available for purchase in our online store.  Please check out the store tab on our site for new t-shirt and hat designs and brands/fit, and even a new custom designed team hailey bracelet, among other things. 

Purchases from the store serve two important purposes: 1.) They are like a walking advertisement for Team Hailey and the PLGA Foundation.  They help show your support for our cause and help us spread the word in ways we could not otherwise.  And 2.)  Proceeds from the store go to a flexible pool of money that our family uses to offset costs or reinvest in fundraising.  It is an important piece of revenue in this process as everything else we do in the way of fundraisers goes directly to the PLGA Foundation for research.  

Now to an update on Hailey.  She had her "end of chemo" MRI last Tuesday.  There was no change one way or another in the size of the tumor.  Not what we were hoping for, but better than the alternative.  We go to Madison next week for Hailey's eye appointment, then a return trip on December 19th for her port removal surgery, and then it truly is a wait and see (and hope) approach.  We will have MRI's every 3 months and are PRAYING to be blessed with a LONG break from having to make another difficult decision.  And most importantly, praying that the fundraising efforts that we, the PLGA Foundation, and the other PLGA families will continue lead to the kinder, gentler treatments and cure we all need.  She will keep her feeding button for now as she still does not get enough variety with what she eats orally (although she eats plenty of what she chooses to eat) and it is a good safety net for now if we have to give medicines as she is so sensitive to what she will take orally.

Hailey and Faith are both doing very well.  Hailey is doing everything a normal 3 year old should be doing.  She's still lower in weight than we would prefer, but she is on the growth chart at 28 pounds which is a definite improvement from where we started.  At times she has her little quirkes that are likely a result of everything she has been through in the last couple years (basically elevated levels of "3 year old" type behavior) but she truly is a joy to be with and a good little girl.  Big sister Faith is also doing very well.  She turned 5 in November and continues to also develop into quite the young little lady. She has a good sense of humor (as does Hailey) she's active, kind, and loves to run around, do art, play with her friends/cousins/neighbors and her sister, watch Barbie movies, dress up, wrestle with daddy, and play at places like air it up or monkey joes.  All in all, we could not ask for too much more out of the last couple years.  So I guess you could say we're hanging tough on this end.

  

Thursday, December 18, 2008 - 8:24pm

Hello:

Tomorrow is the big day; Hailey gets her port surgically removed! It’s really hard to believe. For us, it represents a break from CHEMO! We pray it is a very long break! We’ve all grown so accustomed to Hailey having her port; it will almost be strange to see her without it. I wonder what will go through her little mind. If you think about it, she probably doesn’t remember a time when she didn’t have her port. Today, she asked me how the doctors are going to take it out? Wow, she’s getting smart!  

We have to be to Madison by 9:30 am and she’s scheduled for surgery at 11:00 am. Of course a snowstorm is coming too, just to make things interesting. Faith is coming with us as well. She really wanted to come along, even after we told her there would be no snacking in the car during our 2 ½ hour drive to Madison, because we can’t eat in front of Hailey.  Let’s see, a long car ride, in the snow, with 2 hungry little ladies. Sounds like a blast! 

I also wanted to say a special THANK YOU to my Aunt Carolyn and Cousin Tammy for putting together a great cookbook called “The South is Cookin’ for Hailey”. They live in Alabama and have collected great recipes of the South, featuring traditional Southern, Cajun, and Creole recipes. We have it for sale in the Team Hailey Store. Check it out! 

Wish us luck tomorrow! I’ll update all of you tomorrow night. 

Shannon

Friday, December 19, 2008 - 5:02pm

We made it to Madison and back, safe and sound.  The port is out and Hailey is a bit crabby about the incision and the bandage, but all in all we are doing fine over here.  Thanks for all your well wishes and concerns, and a HUGE thank you to whomever it was that blew open our driveway!  

Here's hoping we don't need that port again for a long, LONG time.

Happy holidays to all of you.  Our family truly thanks you for the caring and support of the last two years, and wishes you all nothing but love, happiness, and health over the holidays and the year to come.

We'll write again soon.